Visit our MS learning channel on YouTube, which provides hundreds of MS educational videospresented by MS Experts from across the USA. Archived here: www.youtube.com/msviewsandnews-- Also please visit our Social media platforms: Facebook, Twitter, and Instagram . Each providingimportant information for the MS community. Furthermore, scroll down the left side of this blog to learn from the resources and links.

Disclaimer:'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, for your personal knowledge and to keep you informed of current health-related issues. It is not a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

Saturday, November 10, 2018

Riders from all across USA rode their motorcycles for 50 days while raising

awareness and funds for Multiple Sclerosis.

LONDONDERRY, N.H. - Nov. 10, 2018 - PRLog -- Since it's inception five years ago, the MS5000 has raised over $125,000 for charity organizations that benefit MS patients and their families. This year, 57 riders from all over the United States rode their motorcycles as many miles as they could over 50 days while soliciting donations from their family and friends. From September 1st through October 20th, they documented their miles, gaining one point for every mile and ten points for every dollar they raised. The winner gets a trophy and bragging rights, and for 2018, Luke Rutledge from Missouri won by riding 6762 miles and raising a whopping $3374 dollars!

100% of the proceeds went to MS Views and News, Inc., and their Ride to Reach Rural America initiative."It is really incredible, to see these men and women dedicate so many hours and miles to help us deliver education, inspiration and hope to so many families struggling with MS in remote areas of the country," said Stuart Schlossman, the President of MS Views and News.

The MS5000 motorcycle challenge is organized by Longhaulpaul (Paul Pelland) who despite having MS himself, is 340,000 miles into his million mile journey Chasing the Cure for Multiple Sclerosis.

Friday, November 9, 2018

Greetings, please don't panic, let me explain. A
few weeks ago I was in Barcelona, Spain, mesmerized. I was watching a
traditional Catalan castell, or human tower, being built. The biggest
members of the group--over 100 strong made up of men, women, and
children--form the stout base. Then the tower assembles upward, level
after level (the record is 10!), until a small child scales to the top
with a final wave. There's a reason UNESCO calls it a masterpiece to be
treasured. I
recorded one such tower for you to watch here being done by the
current world champions (the phone was off to the side, as I didn't want
to miss a moment with my own eyes).

The experience made me realize that we optimistic misfits
must rely on each other as we build our towers of hope--mustering the
motto of castellers: strength, balance, courage, and common sense--in our
quest to manage the challenges of our diseases with unwavering resolve.
And it made me realize that you would be okay if I'm not always the
bottom pillar. The weight of daily Facebook, Twitter and Instagram posts,
weekly videos, frequent blogs, occasional guest posts, monthly
newsletters, and regular website updates had been catching up to me. And
I was still stuck on Chapter Three of the book I promised to write nearly
a year ago. So I told Laura I was thinking of, maybe, possibly,
retiring....

I wasn't prepared for the full-on
"what-you-talkin'-bout-Willis" stink eye that spouses deploy in
times of incredulous befuddlement. Laura was having none of that.

"Really," she said. "Thousands of people
depend on you. You really, really enjoy helping folks. You love
ActiveMSers. And now you want to sit on the couch and do what? Eat
Cheetos? Drink beer?"

I briefly
contemplated saying "obviously both" before wising up.
She was right, of course. I consider all of you my friends, even if our
paths have never crossed except in the virtual world. And for those who
have reached out to me via e-mail, I've saved all your letters, every
single one, and have forwarded dozens on to my parents (names and e-mail
addresses removed for privacy) to show them that they raised a decent
kid.

When I started ActiveMSers, I had no grand intentions of
monetizing the website. And over the years as social media
"influencer" became a new career option, I've resisted, trying
my best not to commercialize it to avoid the biases and inauthentic
pitches that plague so much on the internet today. I still don't accept
ads, paid guest posts, endorsements, or sponsorships despite seemingly
daily inquiries. This might sound downright crazy, as I am not a
tax-deductible nonprofit, just a non-profitable nonprofit, which means
virtually all funds to fuel ActiveMSers--thousands of dollars over the
years--have come out of my pocket (well, technically Laura's).

Yet I wouldn't have it any other way, and it's not because
I'm some virtuous dude. Thanks in no small part to you and your
support--from my New Mexico True contest
win complete with an oversized check to my epic
fight with my health insurer that made the New York Times ...
complete with a drawing of an oversized check--I'm in a fortunate
position where I can most definitely afford it. Indeed, I am forever in
your debt. (And knowing me, I'll probably need your help again for a
future kerfuffle or two since I have a penchant for getting into
mischief.)

Part of my goal at ActiveMSers has long been to be a gatekeeper
of sorts, to sift through the reams of MS news that wind through the
interwebs to find the nuggets that really matter (and amusing silly ones
that don't). I subscribe to dozens of medical newsletters, research
journals, health sites, and MS-specific blogs. I scan the feeds of
hundreds of social media accounts to glean the latest breaking news about
our disease. I read every available MS and neurology magazine cover to
cover. I've been doing this since March 2, 2006, the day I launched
ActiveMSers, now one of the longest running MS blogs in existence,
perhaps the longest.

But then on the
cruise, the one my father survived despite failing the life boat drill,
my gate key was infuriatingly wonky. On the open ocean, internet access
can suck like the Cleveland Browns, especially when you don't cough up
extra dough for "premium" access (or draft football players
poorly). So I gave up trying to stay on top of everything MS related,
mustering only a few random posts. And it felt strangely okay. I missed
you guys, but I didn't miss yet another promising EAE mouse-model MS
study that is a decade away from human clinical trials, or the 6 must-do
diet tips for MSers that are decidedly not "must do," or the
caustic rhetoric of politics that is consuming Twitter and Facebook no
matter how I hard I try to avoid it.

No wonder I have MS fatigue, just not the kind that plagues
most of us. So I've made the decision to lower stress and pull back a
little. A little, just a little! But you will notice some changes. While I
plan to stay on top of exercise and major MS research, I've unsubscribed
en masse to nearly all my MS mailings (a dozen plus a day) including
even the blogs of friends, so I'll regretfully miss some general MS
tidbits. I'll stay on Twitter and Facebook and Instagram,
just not daily--it's not worth the energy and brain suck. I'm also not
going to fret about deadlines, self-imposed or otherwise, so the
newsletters and blog
posts and YouTube videos will
come when they come. The
forum will continue unchanged, but we critically need new castellers
to support this effort, as our regular contributors (in particular AMF
Adventures, aka Larry, aka MS Yoda) deserve a spell from their heavy
lifting over the years. And our main
website will keep chugging despite not being as mobile-friendly as
I'd like it to be (sorry, that's an ongoing frustration with no easy fix
other than a full redesign). Heck, you might even see some entertaining
new wrinkles from ActiveMSers in other areas, and not just those
sprouting on my forehead. I've got some exciting avenues I still want to
explore!

I hope you
understand that making this decision to separate a bit from the MS space
was not one I made lightly. But it's a shit-ton better than maybe
possibly retiring. And I can still show my face publicly, as frightening
as that may be (see right), which was hammered home on the day after our
return. As I rolled into my favorite Indian restaurant, one patron's eyes
brightened noticeably as she waved to me. Crap, I thought. We probably
chatted at some friends' party for a solid hour, or some such thing, and
I now have no clue who she is.

"Dave, I have MS and I am a huge fan of ActiveMSers. I
live just up the road from you and I was wondering when I'd finally get
to meet you! My name is Alexa."

Wednesday, November 7, 2018

Floodlight Open is a study that we hope one day will allow participants, physicians and scientists to monitor MS symptoms and health over time using a smartphone. With the ultimate goal of creating practical tools to improve the lives of people living with MS.

What is Floodlight Open?

Floodlight Open is a study that we hope one day will allow participants, physicians and scientists to monitor MS symptoms and health over time using a smartphone. With the ultimate goal of creating practical tools to improve the lives of people living with MS.

Understanding MS

MS is an insidious and unpredictable disease that can be hard to track and measure. Floodlight Open aims to fill in the gaps and help complete a more holistic picture with the hope to one day help improve care.

Floodlight Open is powered by you. The more we know about your personal journey, the more we can learn about MS. Each data point from each person contributes to a unique and open dataset designed to help move MS research forward.

Sunday, November 4, 2018

Presented by: Craig Dorne, PA, Attorney - Miami, Fl.
It is essential for every person and caregiver to understand their rights and obligations. Too frequently people fail to execute the documents necessary to express their desires. The failure to execute the documents can lead to a person’s desires not being met and a person making their decisions being someone other than the person they want.

For many people, the word "meditation" calls up images of alternative lifestyles or non-Western traditions. However, public perception of meditation has started to shift in recent years due to the scientific community's growing interest in the topic.

There’s still no conclusive proof that meditation makes a measurable, biochemical change in the body or the mind. But some psychologists have proposed that this form of relaxation may help people, including those with multiple sclerosis (MS), reach a calmer state of mind. And this could help reduce the impact of stress.

Many paths to calm

There are many ways to meditate. Just keep an open mind and see which type of meditation works best for you. Before you begin a meditation session, talk to your doctor, select a quiet place, dress comfortably, and find a comfortable place to sit.

Common meditation techniques include:

Thinking breath

A practice of focusing exclusively on your breath.

Feel the cool air rushing in through your nostrils as you inhale, and the warm air brushing against your upper lip as you exhale

Don’t be discouraged if other thoughts enter your mind. View them the same way you view scenery from the passenger seat of a moving car—let them vanish in the distance

Turn your thoughts again to your breath, keeping track of every detail as you breathe in and out—and feel the tension slip away

Visualization

The goal of visualization is to shift your thoughts away from everyday concerns to an imaginary world of your own choosing.

Close your eyes, breathe deeply, and imagine a calm scene. It could be a place you've actually been to or a place you'd like to visit. If your mind wanders, start again

Experience the scene with your mind. If you chose a tropical scene, use your imagination to hear the waves brushing the shoreline and see the palm trees sway

Continue to explore for about 10 minutes. You'll begin to feel relief as stressful elements in your real environment are gradually replaced in your mind by the tranquil sights on your imaginary horizon

Now go one step further and imagine yourself actually entering the scene you've created

Stress incontinence is leakage of urine when your bladder is under pressure, for example when sneezing, coughing or lifting something heavy. This happens when your pelvic floor muscles are weakened. In MS neurological damage can result in weakness to the pelvic floor.Oct 15, 2018

Many people with MS experience bladder problems and some of these can result in occasional incontinence, where bladder control is lost and urine leaks out.

Bladder incontinence ranges from occasionally leaking urine if you cough or sneeze to having such a strong sudden urge to urinate that you can’t reach the toilet in time. Some people experience both of these.

There are many successful approaches to treating and managing episodes of urinary incontinence. Health professionals, including your MS specialist nurse, GP and continence advisor can work with you to find the solutions that work for you.

What is bladder incontinence?

Bladder incontinence (also called urinary incontinence) is a lack of control over when you empty your bladder that results in passing urine when you don’t mean to.

Stress incontinence is leakage of urine when your bladder is under pressure, for example when sneezing, coughing or lifting something heavy. This happens when your pelvic floor muscles are weakened. In MS neurological damage can result in weakness to the pelvic floor. This is because damaged nerves, mainly within the spinal cord, are not transmitting messages to the pelvic floor muscles as effectively as they used to. Other reasons for weakened pelvic floor muscles include giving birth or abdominal surgery.

Indeed, most animal models of MS also lack defined etiologies. We have developed a novel adult-onset oligodendrogliopathy using a delineated metabolic stress etiology in myelinating cells, and our central question is, "how much of the pathobiology of MS can be recapitulated in this model?"

Molecular analyses reveal neurofilament changes in normal-appearing gray matter that parallel those in cortical samples from MS patients with progressive disease. Finally, axon initial segments of deep layer pyramidal neurons are perturbed in entorhinal/frontal cortex and hippocampus from OBiden mice, and computational modeling provides insight into vulnerabilities of action potential generation during demyelination and early remyelination. We integrate these findings into a working model of corticohippocampal circuit dysfunction to predict how myelin damage might eventually lead to cognitive decline.

1

Department of Epidemiology, School of Public Health, Arak University of Medical Sciences, Arak, Iran. Electronic address: ebrahemen@gmail.com.

2

Department of Epidemiology and Biostatistics, School of Public Health, Knowledge Utilization Research Center, Tehran University of Medical Sciences, Tehran, Iran.

3

Department of Epidemiology and Biostatistics, School of Public Health, Tehran University of Medical Sciences, Tehran, Iran.

4

University at Buffalo, Jacobs School of Medicine and Biomedical Sciences, Buffalo, NY, USA.

5

Jacobs School of Medicine and Biomedical Science, University of Buffalo, NY, USA.

Abstract

AIM:

While sizeable evidence regarding the association between stressful-life events and multiple sclerosis (MS) disease activity (clinical and/or radiological) was previously documented, their relation to MS risk is controversial. We aimed to investigate the possible association of stressful-life events and multiple sclerosis risk after adjustment for relevant confounders in an Iranian population.

METHOD:

This was a population-based incident case-control study that recruited 547 MS cases and 1057 healthy controls between August 2013 and February 2015, Tehran. The patients were identified using the Iranian MS Society based on 2010 McDonald criteria. We used standard random digit dialing protocol for control selection. Logistic regression model was applied to estimate the odds ratios (95% CI) adjusted for physical activity, age, gender, tobacco smoking, waterpipe smoking and passive smoking.

RESULTS:

While total life events number was not associated with risk of MS, homeless periods OR 3.85 (1.65-8.90), p = 0.002 as well as divorce OR 2.11 (1.24-3.58), p = 0.005 increased the risk of MS. However, marriage OR 0.59 (0.41-0.86), p = 0.006, death of ones' dear OR 0.60 (0.44-0.82), p = 0.002 and joblessness OR 0.61 (0.41-0.91) reduced the risk of MS.

CONCLUSION:

We could not detect a statistically significant role for the total stressful life event during the last 3 years and MSdiagnosis. However, there is some evidence confirming the possible role of some individual life events, i.e. divorce and periods of homelessness as potential risk factors for MS and conversely, having married as a protective factor in MS onset.

Abstract

BACKGROUND:

In the United States, people with relapsing-remitting multiple sclerosis (RRMS) can face difficulty accessing disease-modifying therapies (DMTs) because of insurance, pharmacy, or provider policies. These barriers have been associated with poor adherence and negative health outcomes.

OBJECTIVE:

The goals of this study were to describe the overall occurrence of difficulties and delays associated with gaining access to DMTs among people with RRMS, to assess DMT adherence during periods of reduced access, and to contextualize the patients' journey from receipt of a prescription for DMT to obtaining and taking their medication when faced with access barriers.

METHODS:

We recruited US-based adults self-reporting RRMS from a Web-based health data-sharing social network, PatientsLikeMe. Individuals were invited to complete a Web-based survey if they reported a diagnosis of RRMS and were prescribed a DMT for MS. Follow-up phone interviews were conducted with 10 respondents who reported experiencing an MS-related relapse during the time they had experienced challenges accessing DMTs.

RESULTS:

Among 507 survey completers, nearly half were either currently experiencing an issue related to DMT assess or had difficulty accessing a DMT in the past (233/507, 46.0%). The most frequently reported reasons for access difficulty were authorization requirements by insurance companies (past issues: 78/182, 42.9%; current issues: 9/42, 21%) and high out-of-pocket costs (past issues: 54/182, 29.7%; current issues: 13/42, 31%). About half (20/39, 51%) of participants with current access issues and over a third (68/165, 41.2%) of those with past issues went without their medication until they could access their prescribed DMT. Relapses were reported during periods of reduced DMT access for almost half (56/118, 47.5%) of those with past issues and nearly half (22/45, 49%) of those with current issues. Resolving access issues involved multiple stakeholder agents often coordinated in a patient-led effort. Among those who had resolved issues, about half (57/119, 47.9%) reported that doctors or office staff were involved, under half (48/119, 40.3%) were involved themselves, and about a third (39/119, 32.8%) reported the drug manufacturer was involved in resolving the issue. Follow-up interviews revealed that the financial burden associated with obtaining a prescribed DMT led to nonadherence. Additionally, participants felt that DMT treatment delays and stress associated with obtaining the DMT triggered relapses or worsened their MS.

CONCLUSIONS:

This study expands current research by using a patient-centered, mixed-methods approach to describe barriers to MS treatment, the process to resolve barriers, and the perceived impact of treatment barriers on outcomes. Issues related to DMT access occur frequently, with individuals often serving as their own agents when navigating access difficulties to obtain their medication(s). Support for resolution of DMT access is needed to prevent undue stress and nonadherence.

SYMPTOMS of MS

In multiple sclerosis , damage to the myelin in the central nervous system (CNS), and to the nerve fibers themselves, interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. This disruption of nerve signals produces the primary symptoms of MS, which vary depending on where the damage has occurred.

Over the course of the disease, some symptoms will come and go, while others may be more lasting.

MS Views and News Guide Star Status

Find MS Views on Facebook

About This Blog

A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.

MS Coalition Associate Member

MS Views and News

Healing the Soul, by B. Khatri, MD

Click photo for more detail

Sharecare Marketing - March 2014 - LISTED Stuart among the Top "10"

Social HealthMakers: Multiple Sclerosis

Disclaimer:

"Stu's Views & MS News" / 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly

About Me

MS Views and News is a 501c3 Not-for-Profit organization that provides IMPACTFUL information to the MS (Multiple Sclerosis) community. To learn of the educational programs we provide live and virtually, opt-in with us from here: www.register.msviewsandnews.org
- thank you -

2014 MS Symposium from Miami, Fl

Brian Steingo, MD - Presents on Dietary & Self Aspects

MS Views and News

MS Views and News (MSVN), is dedicated to the global collection and distribution of information concerning Multiple Sclerosis (MS). Through partnering relationships, MSVN provides education, advocacy and service to empower and enhance the quality of life of the MS community.

Marketing Opportunities with MS Views and News

Att: Marketers :

Get New Exposure to either venues in Florida, the USA or Globally

Becoming a Sponsor of MS Views and News will enable us a few dollars more to host Multiple Sclerosis learning programs for those affected by MS and a sponsorship at the correct tier would place your logo and url on our site(s) and possibly with our social media offering you lots of new exposure.

FL Dept of Agriculture

MS Views and News, Inc. is registered with the Florida Department of Agriculture and Consumer Services, Registration # CH37993

A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE (800-435-7352) WITHIN THE STATE. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE.